Welcome to a very busy awareness month for me! May is not only home to Celiac Awareness, but also to Ehlers Danlos. If that wasn’t enough, May 15 is World HG Day. Yeah, it’s a lot.
I’ll be posting more about Celiac and Ehlers Danlos throughout the month, along with a special post about my struggle with hyperemesis gravidarum that will be going up on May 15. But don’t worry, this post isn’t all about my plans. I want to get you all acquainted with these illnesses by sharing a few fast facts!
According to Beyond Celiac, about 1 in 133 people has Celiac disease. That’s about 1% of the population!
Some people with celiac disease have a form called “silent Celiac,” which lacks the major symptoms such as intestinal troubles. (I do not have this type)
According to Beyond Celiac, up to 83% of people with celiac disease are undiagnosed or misdiagnosed. That’s why we need an awareness month!
According to an article on the Celiac Disease Foundation‘s website, celiacs who go gluten free may gain weight. Malabsorption of nutrients while your intestine is under attack can allow you to eat way too many calories without even noticing. Once your small intestine starts healing, that will catch up to you. (This happened to me! I weigh roughly 15-20 lbs more now than I did at the height of my celiac problems.)
Untreated celiac disease raises your risk of other health problems. You can read more on the Celiac Support Association.
Ehlers Danlos Syndromes:
The Ehlers Danlos Syndromes have just been reclassified this year. Previously, the diagnostic standards were last changed in 1997. That’s 20 years!
The Ehlers Danlos Syndromes are actually a set of connective tissue disorders. One of the main symptoms is hypermobility, but there are also other causes of hypermobility that have to be ruled out before an EDS diagnosis.
There are now 13 subtypes of EDS. Formerly, there were 6.
One of the weirder symptoms of Ehlers Danlos Syndromes is having velvety soft skin. Yep, my skin is as soft as a baby’s!
Ehlers Danlos Syndrome is a genetic disorder affecting the collagen. Collagen makes up a lot of your body, so Ehlers Danlos can affect just about everything! (For example, my eyes are affected.)
The leading organization in Ehlers Danlos research is EDNF, the Ehlers Danlos National Foundation. There are a lot of opinions– both positive and negative– about the EDNF in the EDS community.
Ehlers Danlos Syndromes are a rare disease, although statistics vary widely on how many people have the disorders. It could range from 1 in 2500 to 1 in 5000.
Hyperemesis Gravidarum is severe nausea and vomiting during pregnancy. Although up to 80% of pregnant people have some nausea or vomiting, HG includes electrolyte disturbances and weight loss. (I lost ~30 pounds during pregnancy.)
Some people get relief from HG by 20 weeks, but 20% of people with HG do not experience relief from symptoms until the pregnancy is over. (I was one of that 20%!)
The HER Foundation is the leading foundation for Hyperemesis Gravidarum advocacy and information.
Hyperemesis Gravidarum can cause anxiety, depression, and in some cases, PTSD.
Since writing this post, I have been informed that it’s also allergy and asthma awareness month. Whose idea was it to put everything in the same month? I’ll also be sharing some asthma and allergy posts (and resharing some I’ve already posted.) However, I don’t want to add more info to an already heavy post, so you’re off the hook for now.
Do you have any illnesses or diseases that are raising awareness in May?